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PRRT is hung up with the FDA approval process. I can't post messages with links yet, but if you Google this text with quotation marks, you will see a relatively recent news release with the basics.
"Advanced Accelerator Applications Announces Presentations on Lutathera® NETTER-1 Phase III and NeoBOMB1 at EANM"
My understanding based on the medical literature I've combed through since December 2015, when I was diagnosed, is that surgery is considered the first-line treatment for carcinoid. Whether surgery can be done or not depends on a lot of other things. But surgery is first.
I was diagnosed with stage 2 multifocal carcinoid (small intestine) after exploratory surgery last year. This was after a small bowel obstruction in Dec 2014 that left me with symptoms that got progressively worse until surgery in December 2015. To date, not a single one of my tumors has been detected by anything but the human eye (the surgeon's) despite multiple scans and colonoscopies, endoscopies, etc. The tumors were a complete surprise.
Because I'm still experiencing symptoms 11 months after those 5 tumors were removed from my small intestine, my oncologist is trying me on Octreotide to see if my symptoms respond. First attempt at Octreotide did not go well because I **may** have had an allergic reaction to the test dose. I am a lifelong (but very mild and completely controlled) asthmatic and 20 minutes after the test dose was injected, I started experiencing wheezing. However, I was getting over a cold anyway and so it might *not* have been an allergic reaction. We are trying another test dose at the end of the month. If I have the same reaction, we will have to develop a Plan B.
Apart from the maybe-allergic reaction, my response to the test dose of Octreotide seems to have been typical according to my oncologist: bad stomach-ache and headache 5 hours after the shot. Oncologist indicates that this goes away after a couple of days when your body gets used to it. I'm really hoping I don't have the maybe-allergic reaction because I'm frankly not sure what they'll do for Plan B.
Replies to "PRRT is hung up with the FDA approval process. I can't post messages with links yet,..."
Hi, Hopeful--yes, you have that right, my tumors were never caught by colonoscopy, upper endoscopy, CT scans, or small bowel follow-through. Largest was just under 2 cm and that was probably the one that caused the small bowel obstruction. My symptoms began immediately after the obstruction resolved and have been consistent to this day almost 2 years later. I have nausea constantly which can be relieved only by eating --does not have to be much, a cracker will do it. I have a burning ache in my lower right abdomen which cannot be explained. Finally, incapacitating fatigue at irregular intervals. I participated in the Gallium-68 clinical trial at the University of Iowa this fall and that scan showed diffuse uptake around the pancreas but no sign of a tumor. The Iowa physician and my own oncologist say they cannot rule out tumors as the cause of my symptoms, particularly since I am one of the 25% of carcinoid patients with tumors that are multifocal. The reason they want to try me on Octreotide is to see if it relieves my symptoms. If it does that will be proof that the carcinoid is the cause (all other causes having been ruled out).
@wordnoid Thanks for the additional information. Usually the symptoms of carcinoids involve flushing and diarrhea, however, the nausea and fatigue is certainly something that I can relate to as well. Like you, I've found that just a little bit of food (I also use crackers) will relieve the nausea. I'm also interested in being evaluated with Gallium 68, but have not gotten to that yet. Do you also have the other tests to check Serotonin levels, CaG and the 24 hour urine? Thanks again for sharing your story, it is very helpful to us all.
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Hello @wordnoid. Welcome, I'm glad to see that you have joined Mayo Connect. Thanks for your post and adding to our discussion regarding carcinoid treatments. As with most carcinoid patients, your story is quite unique and the attempted treatment with Octreotide is also something that I have not heard of before. You mentioned that your carcinoids were not seen with endoscopies and only surgeries, is that correct? I have had three carcinoids of the upper digestive tract and they were all diagnosed with upper endoscopies. You mentioned that you began the Octreotide because of symptoms. If you care to share more about the type of symptoms you have been having that would be helpful to our discussion. Thanks again for being part of Mayo Connect. I hope that you find this online patient support group as helpful as many of us have. We are glad to have you as part of our online community!